I love daily routines. For me, having a set of habits and to-do projects waiting to be tackled helps me feel grounded when the world’s events are in turmoil. And more importantly, daily routines keep my mind focused on things other than my ALS. What I don’t love are disruptions, interruptions, and the inevitable challenges, both big and small, that chip away at my patience, energy, and precious time. Everything from emails to news stories and nearby conversations has the potential to throw my focus off. But I have a few trusty strategies I rely on that help me navigate my day’s ups an ..read more

  It all began as one of those typical online interactions when someone reaches out and asks for help. A gentleman contacted me via Facebook, explaining that his friend was recently diagnosed with ALS. He wanted to ask me a few questions. I noted that we were connected as “friends of friends,” so I agreed, and we arranged to chat via Facebook video. I don’t mind helping others learn more about ALS. I’ve been living with it for 14 years now, and I’m happy to share advice on topics such as rollators, mobility scooters, or the best exercise videos for ALS. That’s because tho ..read more

  I’ll admit that during my high school days, when our studies turned toward physics, I didn’t pay much attention. Gravity, the invisible force that keeps us on the ground and makes things fall, seemed so bor-ring. But in 2010, when I was diagnosed with ALS, the condition put me through an intense refresher course in exactly that: GRAVITY. What happened?   A walk up a hill suddenly felt like I was mountain climbing, and my coffee mug felt as heavy as a barbell. Gravity tugged my balance as well. A simple trek across the living room morphed into me grabbing nearby furnitur ..read more

Would it surprise you to learn that I check my cell phone zero times a day? All around me, people are texting, emailing, chatting, and checking social media. Me? Nada. My eyes are forward, watching the world. I’m embracing “the joy of missing out” — a state of mind caused by my ALS. The value of emojis When I was diagnosed with ALS in 2010, smartphones were a unique technology. As my symptoms progressed (including stiff, tight muscles), smartphone owners honed their texting and swiping skills. To me, their thumbs and fingers were tapping as fast as a line of Ra ..read more

  I’m always surprised how something simple and totally unrelated to ALS can change my perspective about living with the disease. For example, who knew that a bag full of unfinished knitting and crocheting projects could lift me out of a temporary mental funk, return me to feeling positive and hopeful, and restore my humorous outlook on life? But it did. And I’m having so much fun with my new mental game that I think it might help you, too. Here’s what happened: Meet my bag of UFOs Lurking on the floor near my sewing machine is a large canvas bag where I put my “UFOs.” (Th ..read more

  Like many who live with ALS symptoms, I rely on a rollator. But when out and about and covering longer distances, I use a mobility scooter. My scooter is perfect, and I feel comfortable and confident going almost anywhere with it. Recently I crossed that almost off the list Mobility scooters aren’t often seen at gala banquets with everyone dressed to the nines, but a while back, I accepted an invitation to attend one. Immediately, I stressed over the details. My outfit? I picked out something fancy, yet comfortable enough to sit in all evening. M ..read more

  My husband is one of those people who attack projects from beginning to end with a laser-like focus. Me? Oh, I get things done — well, eventually. Distractions, the tendency to overcommit plus a curiosity to follow “the next big thing” all contribute to my meandering approach.  Really, I do plan to finish things — well, someday. However, since being diagnosed with ALS, I’ve been trying hard to adopt my husband’s approach. Because with ALS, time is no longer a limitless commodity, and safety concerns are a constant priority. Do it now, and get it done, is my hope an ..read more

  My ALS diagnosis was in 2010; in the months that followed, I tried to learn as much as possible about the condition and how it would affect my life going forward. Imagine my disappointment to discover that medical experts knew almost everything about the physical progression of ALS and what to expect at each stage of the disease. But, they were only beginning to understand the emotional impact on patients living with ALS. The general assumption seemed to be that if a person has ALS, then he or she must be depressed and have a low quality of life. Why such low expectations Experts p ..read more

  Yup, it’s that time of year again — lag time! We’re in that weird space in time that’s just after all the holiday hoopla and right before the “next big thing” comes along. It’s a time to catch up, reflect, and take a well-earned breather. And for those of us in the Northern Hemisphere, it’s a time of waiting for the welcome signs of spring! But for many of us living with ALS, the lag time can last all year long. ALS puts us in a kind of permanent pause mode from our formerly active lives. The pause can be overwhelming and often leaves us feeling empty and alone. It’s as if w ..read more

Fourteen years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was during my first year with ALS, a time when I felt the heavy weight of worry and having a life disrupted by a disease I didn’t even understand. Fast-forward to today, when my mornings have me feeling good and starting the day with a positive attitude. My mornings are a daily ritual of mindful thinking and movement.   What do I do and how does it help me? Let me tell you more. How my morning routine came to be Years ago, before ..read more